Archive for March, 2010

I do a monthly newsletter called “Chemotalk”. My April issue is almost ready to go, but it was missing something. I didn’t know what that was until I read an essay in today’s (3/30/10) New York Times’ “Science Times”. It’s by Theresa Brown, “…an oncology nurse and a regular contributor to the Well blog.” I’m going to reproduce it word-for-word at the end of the column.

What Theresa says goes to the very core of why everybody loves nurses. It’s why we love them even more than doctors, even doctors we love. Nurses represent. And it’s us, their patients, that they’re representing. Whether or not you agree with Ms. Brown’s opinion, the thing you can’t miss is whose side she’s on. That’s a remarkable quality, in the business world of healthcare.

I know a lot of nurses personally, but there’s something about oncology nurses that I can only describe as extra soulfulness. They have to be able to stand the fact that some of us will be around for long enough to become friends of theirs, but they’ll be around to see some of us die. That’s not easy to stand, but they stand it, and they help us stand it. Ask an oncology nurse a question, and you better be ready for the answer, because these people shoot from the hip. And they’re aces.

How they found me so fast, I can only guess. I’m talking about the sex sites that Google the word “mammogram” and decide, “Okay…people reading that stuff are talking about breasts, and breasts = sex, so they’re probably gonna really want to look at some porn…” That makes sense, right?

On the other side, some comments to these blogs are coming from people who deal with reality, and it’s not always a pretty one. They seem to say this blog and the site are helpful. That’s why I’m doing this. So, for whatever it’s worth, at least I can make one promise I’m sure I can keep: no porn site is getting a free ride on this space.

A friend told me a story today that made start thinking how business-as-usual goes on because companies don’t appear to have the guts to risk change. It’s oh-so-easy to keep those costs out of the public’s purview and pass them on to us, the consumers. This goes for all businesses, but I’m concerned here with the mega-companies that rule the business of healthcare.

My friend’s daughter, a nurse, attended a dinner arranged by the people who run the corporation she works for that manages nursing homes. Showing them a good time is one of the ways they woo doctors to refer patients to their facilities. Taking them out for expensive dinners, for example. The irony is, for the most part the patients that these doctors care for, are on public assistance.

Maybe my thinking is twisted, but the way corporations entertain clients, the way banks pay exorbitant bonuses to their overpaid executives, is one of the things making people so angry. Even if we know what’s going on, what can we do about it?

We’re the ones who get the shaft when health insurance companies raise their rates 43%, calling it a matter of covering the rising costs of health care. Never mind that it’s their practices raising … you get it.

When I heard that rate-hike announcement by Anthem Blue Cross last month, I knew how arrogant these people really are. It never occurred to them that their timing was a little off. That’s just dumb. But President Obama, who is anything BUT dumb, saw the opportunity to make a point, in a big pro-healthcare speech. He grabbed the news story, and ran with it.

What if, in my friend’s daughter’s case, the doctors would be willing to say “I like the way you do business,” to companies demonstrating even the tiniest bit of restraint? What if, instead of partying at the most impressive steak house in the city, the doctors enjoyed an excellent catered dinner in the company’s corporate dining room, or conference room, or whatever … And what if doctors were impressed by the corporation’s commitment to keep costs down, to do their small part to change the way healthcare costs keep rising beyond anything reasonable, even in the business world? What if JUST ONE mega-company moved to change the culture of rewarding or honoring folks they want to impress by spending a lot of money on them, even before they they’ve earned the company a dime? I’m a marketing-and-public relations consult, I see a ton of good press for a pretty unpopular target.

It seems to me that the only angry people we see and hear on the media are blowing in the wind, from ALL directions. Nobody is offering any substantive solutions. Nobody is willing to risk losing a few dollars by changing business-as-usual. I’m solution-oriented by nature. If the whole healthcare system is broke, let’s fix it. Start by changing the culture of business.

I think a lot of angry people would have to applaud any company that broke ranks and at least tried.

I’ve known forever that exercise is an important component of staying healthy, including mentally, since it alleviates anxiety. I know that because I always feel really good when I finish exercising – and not just because I’ve finished exercising. I’m not speaking out of…y’know. There are studies.

Some particularly intriguing studies suggest exercise keeps cancer from returning. I also somehow got the message – in this case, it’s a mere rumor, since I can’t track the source – that EXTREME exercise is even better than just ordinary exercise.

Everybody has their own idea of “extreme”, but in my case, it means that at least 5 times a week (it would be every day, if I didn’t have other jobs that get in the way), I walk the mile down the mountain – a literal mountain, by the way – to Sunset Boulevard, load up with groceries at Trader Joe’s, and climb back up to my house. Do I “break a sweat”, which is apparently an important component of ”extreme” exercise? O, yeah.

I’ll never have the dedication to exercise that a professional athlete has, but there’s an element of commitment to exercising to keep cancer away that allows me, for the first time in my life, to understand how the Lance Armstrongs of the world relate to their bodies — something that never really clicked when I exercised to get into a particular article of clothing. Before cancer, my dedication to exercise never lasted more than a few weeks or months. And then I inevitably returned to being the lazy sot I’ve always been, down deep.

Without planning to make a commitment, I apparently did. It’s a commitment to exercise as extremely as I can stand, so I’ll stay healthy and live longer. I think what makes it different this time is that the road to exercise was organic to my lifestyle. Without trying to construct it, I formed an exercise regimen.

If you hate exercise as much as I do, you might want to aim for something that fits easily into your life, a “plan” that just evolves. I’m not deluding myself into thinking I’ll ever have the body of a 25-year-old again, but I really like the idea that I’m doing more to protect myself against the killer that lurks.

Here’s the most important thing I’ve discovered about exercise: I feel better than probably any time in my life. I still eat enormous amounts of candy and sweets between dinnertime and the end of the day. But the exercise has helped me lose an entire jean size, something I haven’t been able to do since high school. Yeah, you can be old and vain, at the same time, and I’m still here to prove it.

My second job out of college was in the sales promotion department of a local TV station. There, I learned the skills necessary to twist numbers into combinations that encourage advertisers to buy time on the station. I’m not great with numbers, but it wasn’t rocket science. Nobody checked, anyway, as long as the station looked good. And out of that grew my skepticism about statistics, in general.

If statistics are to be believed, I should be planning my funeral about now. Five years is generally considered to be the outside statistical boundary of survival for anyone whose initial diagnosis is stage 4 breast cancer. Well, guess what….I’m not only not dead, I’ve never felt better in my life.

Statistics have their purpose, but they don’t define our futures. The sooner we figure that out, the faster we can concentrate on returning to the life we had before the disease, or implementing the new life we invent that’s fuller, richer … just plain better than the old one.

Here’s the quick-and-dirty about how statistics come to be. A researcher gets an idea and funding for a project. Numbers are gathered, some of them as long ago as 5 to 10 years before the study containing the statistics is finally published – first in academic journals, where it’s “vetted” by peers – before it finally reaches the general public. All of this takes years.

In the meantime, hundreds of new drugs that have been developed and released to treat our conditions hit the marketplace, changing or challenging the outcomes of those statistics, even as early as while the numbers are being crunched. Look around you. With a few unhappy exceptions where research hasn’t caught up with need yet, like pancreatic cancer or the most aggressive form of multiple sclerosis, we’re living longer.

No, living longer isn’t “cured”. If you think about it, we begin living a different life when we hear “You’ve got…”, whatever it is. We can never go back to the life that preceded those words. And to a great extent, how the rest of our lives play out have very little to do with statistics. It’s how we chose to live, however long that is, that matters.

The reason I decided to post this now is because I was discussing statistics in general with a friend dealing with her cancer, when she told me a terrifying first-person story about her own oncologist, who was caught by the FDA and charged with manipulating statistics. Dubbed “Dirty Harry” by his detractors, and even more frightening than her story, the charges against him were unaccountably dropped.

I’m not suggesting that statistical errors are most often produced by design, as in the case of my friend’s doctor. The majority of numbers are just subject to manipulation, often to suit the premise of the hypothesis the researchers are pursuing. And they’re almost universally out-of-date.

Here’s how we should view statistics: infrequently. And with a healthy does of skepticism. The odds of yours, or my particular case fitting neatly into any statistical pattern, is extremely small. Probably statistically so.

Just a reminder, to anyone who is diabetic and taking the chemo drug Xeloda. This drug often causes peripheral neuropathy, specifically “hand and foot syndrome”. The symptoms include numbness in fingers and toes. If the symptoms are extreme, the feet can become so painful that walking becomes difficult.

I lived with a diabetic until he died of that disease. One of the symptoms of diabetes is peripheral neuropathy. In layman’s terms, you don’t have feeling in your hands and feet.

That’s why if you are a diabetic and taking Xeloda, you should pay very careful attention to the condition of your feet. You may not feel a sore that develops between your toes, or on the sole of a foot. That sore could become infected and if neglected, it could turn gangrenous.

Gangrene is an extreme side effect of diabetes, but it isn’t all that rare. So if you are diabetic and taking Xeloda, make sure you examine your feet very carefully, and very often.

I talk about this in my book, but you can’t say it too often. Oncology nurses are the most wonderful people in our chemo universe – in many ways, moreso than our doctors.

I remember one day during treatment when I happened to glance up from my newspaper. Across the room, but very quietly, a drama was taking place. I saw a group of nurses gathered around a chair, a lot of activity going on…and then the paramedics showed up.

Someone had a bad reaction to one of the drugs. The nurses were not only “there”, they were calm, competent to handle the crisis, reassuring to everyone else (because seeing that happen to somebody next to you getting those powerful drugs, can blow you out of your chair).

You can’t just count on training, to be a good oncology nurse. There are other ingredients, having to do with character. Healers are special in every arena, but in that treatment room, they personify the word “hero”. Day after day, they see people in pain, confused, frightened, angry. They form attachments to their patients, patients that often don’t make it. They absorb all of this, plus whatever dramas are going on in the facility where they work, and somehow they still always step up, they always have the right words to make the experience easier.

Yesterday I got an email from a friend I hadn’t heard from in about a year. She’s in the hospital, having just had a hip replacement, the result of chemo treatment for cancer. Last month, I had a hysterectomy, the result of the chemo drug I still take. The point: chemotherapy isn’t just about the time you spend in the chair, or the pills you drop for 6 months. It has an afterlife that can go on for years. Side effects aren’t just nausea or anemia, they’re hip replacements and hysterectomies.

I walk up a real mountain almost every day, most of the time carrying a load of groceries. I break a sweat almost all the way up that climb. I also keep my muscles strong, because I have osteoarthritis. I had arthritis before chemo, that’s why my knee blew out. But was the arthritis exacerbated by chemo? There’s evidence that there’s a connection. Who else is wondering about this stuff?

The book is designed to support us through the entire chemo journey. What I want to happen here is, I’ll read something and think “Wow, I never thought of that!” That’s why your participation is so important. You’re the person who’s going to put the relevant parts of your story into words that will help others figure things out.

And about the book: if I ever have to go through chemo again, a copy of my book will be tucked into my purse from the get-go. Every time I open it, I see something that I forgot I wrote, something I’m glad I wrote, because it’s going to help me get through it, both physically and mentally.

Maybe it’s dangerous to use this space to vent about personal issues, but I’m taking the chance on this one topic – language – because it keeps coming up.

On this blog, as long as participants don’t make threats, don’t incite anti-social behavior, don’t straight-out lie (I think that pretty much covers the “don’t”s), they can say what they want and use whatever language in which they feel comfortable expressing themselves.

When I was first diagnosed, I went on a live chat. Within two sentences, I was thrown off. I was so naive I thought there was some mistake, so I went back on. This time, I was thrown out again – but not before someone else made the comment “Why is she getting thrown off?” I didn’t swear, I didn’t do anything un-pc, I just expressed a point of view that the Mean Girls didn’t like. It was like being back in high school.

This week, a site I visited posted a comment from somebody who took offense at another person’s jokey response. As a result, the Insultee asked the site to somehow block the Insulter’s messages from coming through to her email. Quoting Whoopie Goldberg again: W…T…F!

We’re all adults here. The point of this, or any forum, is to feel free to express opinions without censure. I’ve worked in the media for over 50 years. I was in the house the day Kennedy debated Nixon and changed the face of politics. After these many years, I’ve become attuned to the subtle subtexts of phrases that many people take at face value, as well as the ways in which we’ve limited communication by insisting that nobody be “offended”. I find that to be one of the greatest offenses of all.

Anyone who wants to voice an opinion here is not only welcome to do so, he or she is encouraged to, using whatever language they choose. If you agree, fine. If you want to expand on something, go for it. If you’re in a contentious frame of thought, let it fly. If you have a question, I’ll find the answer, or a range of answers, so you can decide for yourself…